Friday, May 22, 2009
Day +51: Happy & Thankful for the Same Old, Same Old
Today is day +51 and, much like most days recently, it has been uneventful and somewhat boring...THANK GOD! Max had an appointment at the Day Hospital today at 7:30 am so, we were up and out the door early. It went well while we were there. Max received an infusion of a medication called IVIG (stands for IV immunoglobulin) which is created by filtering immunoglobulins out of multiple people's blood. He is receiving this medicine every other week right now to get him through the most critical phase of immune suppression. We were told by one of the nurses in the hospital that each bottle of this IVIG cost $16,000! That's right...you didn't read the numbers wrong! $16,000 a pop! On the off weeks from IVIG, Max is getting another similar drug called Cytogam. It is just like IVIG but, filtered further to get just the immunoglobulins that fight the CMV virus. So, I'm sure it is equally expensive...maybe even more!
We truly are not concerned with the cost of things right now. I just share that with you to share our shock at the cost of some of this treatment. Of course, we are doing whatever it takes to get Max healed and back to "normal." Our insurance has been wonderful so far so, we are hoping that will continue. One day we are sure that we will understand the full extent of this treatment and the total cost but, until then, we do as the doctors say and know we will figure out a way to cover things later.
We got continued good news today about Max. His CMV level has decreased to the point that it is barely recognizable anymore (thanks to the Cytogam discussed above and the Gancyclovir that he has been treated with over the last several weeks). One thing that was of concern this week was that his white blood cell count was fairly dramatically reduced. However, Dr. Davies is suspecting it is from the Gancyclovir that we have been using along with the Cytogam to treat the CMV. So, given that Max seems to be fighting off the CMV now, we are going to discontinue the Gancyclovir for now too. This is great news again because it is the last IV medicine that we have here at home! Thus, Max will not have to be connected up at all! We may have to go back to using it in the future, should the CMV start to rise again but, for now we are thankful for this progress.
In addition to all this, we are almost done with the steroid that Max has been on. We have been weaning it slowly over the last four weeks and he is on the last week of it! It is going well as no signs of Graft vs. Host Disease have showed up! It becomes clearer to Matt and I everyday how much Max and Ellee are alike...and Max's body's acceptance of Ellee's marrow just confirms this fact! They are cut from the same mold!
Overall Max is making great progress. As I tell Max all the time, he is doing a wonderful job taking care of himself and it is showing. He is taking it easy and is resigned to the fact that he can't do his normal things right now. We look forward greatly to little milestones - like getting to play with his cousins after day +60; getting to go outside without his mask after day +100; and the possibility of having his central line removed around day +100! All small steps in the right direction and toward a bright future with all this in the past.
Post the +100 day mark, we will still have challenges as the entire first year will be needed to rebuild Max's immune system. Thus, Max will still be under some restrictions. In particular, he will not be able to return to areas where there are lots of people and potentially lots of germs. Church, school, shopping, restaurants, swimming pools, etc will still be out until probably next April. Although, Max would say, "I'm OK with it"...there are a lot of other things for a seven year old to do without going to these places! Once he can play with a few friends and get outside without wearing a mask, he'll be in heaven for awhile!
This experience has changed all of us in many ways. We are realizing that more and more everyday. The little bit of normalcy that I have had in the last couple of weeks has made me realize what a different world that we have been living in for the last four months. I know that I am forever changed from this...I'm just not sure what it all means yet. My eyes have been opened to so much need and suffering and I really want to be able to do something about it. My struggle at the moment is what and when. I'm not ready for "it" yet and don't know what "it" is yet but, I'm going to work on "it" and figure "it" out! So, if I see you and act goofy or seem like I'm not all there, you'll know why. :)
Thanks for your continued support, concern and care. It really means a lot to us to know that people are still following along with us on this marathon journey and keeping all of us in their thoughts and prayers.
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)